B12 Tests - any point and what are they?

[kerrilyn]

Wasn't sure where to ask this question, and didn't want it to get buried in an already long thread.

I'm trying to follow as much of the B12 info on this forum as I can wrap my head around. I have had OI/POTS symptoms for many many years. Other than knowing I have low ferritin (which never seems to improved), I've not been tested for anything.

My mother's side of the family has lots of members with endocrine, MS, migraines, and mental instability problems. I just learned that my grandmother (who is long dead) mentioned pernicious anemia to my mother years ago. Unfortunately my mother is elderly now and can't remember what/who it was in reference to exactly, but with the illnesses that are frequent on that side of the family this new piece of info got my attention.

I called DirectLabs to get a Methylmalonic Acid Urine test which Rich has mentioned and is not suppose to need a doctor's requisition. But they said it is not a kit so cannot be shipped to one's house, instead you have to take the test at a lab they deal with (?). Hmm...? What am I not understanding?

My GP has been useless to me in the past, I haven't seen her in 1-1/2 yrs. My ND (who is more open-minded) said she will test me for B12 and folate - through a blood test. I've read the MMA urine test is the 'gold standard'. So, I'm wondering what should I be tested for exactly? Is it worth testing for anything if they are not accurate? And (ideally if anyone knows) how do I get such tests in Canada - or shipped to Canada?

TIA

 

[BEG]

Hi kerrilyn, I was given a blood test for B12 by a CFS specialist. This was probably 3-4 years ago. My B12 was low. I was given the injection kind of B12 which I'm still using today. I can say for certain that it helps my O.I. When I don't use it regularly, I feel a little worse for it.

If your doctor is offering the B12 blood test, I would definately take her up on it. I've also heard that Procrit might be worth a try for O.I. However, I don't know anyone who has tried it.

Good luck to you. I would like hear the outcome.

 

[Sushi]

Hi Kerrilyn,

I've been following B12 questions for a long time now as I am doing Rich's Simplified Methylation Protocol. The blood test is not likely to give you enough information to be useful. It is not unusual to test normal or high on a blood test for B12 and be deficient because of the many complexities and types of B12 -- active and inactive. The blood test lumps everything together.

Low B12 itself can cause OI, though it is usually more complex for most of us. Perhaps you can find a combined test that offers MMA plus other markers that would be useful to you in considering treatment. The other marker very important to judge folate levels (and thus indirectly, methylation status) is Formiminoglutamic Acid (FIGLU). Both of these are tested in the organic acids tests offered by several labs, and many of the other organic acid levels will give you diagnostic and treatment clues as well.

I am not sure how it would work getting these tests paid for in Canada. Many US insurance companies pay for them.

Brown Eyed Girl also mentioned Procrit for OI. It has been shown to be helpful for some....but it has risks and it is good to do some reading before requesting it.

Hope that helps!
Sushi

 

[richvank]

Wasn't sure where to ask this question, and didn't want it to get buried in an already long thread.


I called DirectLabs to get a Methylmalonic Acid Urine test which Rich has mentioned and is not suppose to need a doctor's requisition. But they said it is not a kit so cannot be shipped to one's house, instead you have to take the test at a lab they deal with (?). Hmm...? What am I not understanding?

My GP has been useless to me in the past, I haven't seen her in 1-1/2 yrs. My ND (who is more open-minded) said she will test me for B12 and folate - through a blood test. I've read the MMA urine test is the 'gold standard'. So, I'm wondering what should I be tested for exactly? Is it worth testing for anything if they are not accurate? And (ideally if anyone knows) how do I get such tests in Canada - or shipped to Canada?

TIA

Hi, Kerrilyn.

Perhaps they misunderstood and thought you meant the serum methylmalonic acid test, which requires a blood draw. It should be possible for you to do the urine test yourself. And I do know of at least one person in Canada who has ordered tests successfully from directlabs.com.

Rich

 

[kerrilyn]

Thanks everyone. I apologize to the moderators, I should probably have put this in the Lab Testing area. I didn't see that area till after I posted (not very observant).

I'll do the simple blood tests anyway. It sounds similar to the TSH test not being effective for thyroid evaluation. Figures!

Sushi: "Low B12 itself can cause OI, though it is usually more complex for most of us."

I'm just hoping (fingers and toes crossed) that I could get lucky and not be as complex, but I'm not holding my breath. The thought that *something* could be found with testing is so appealing.

Rich it's possible the lady on the phone didn't understand my request. I may just order it online and not speak to a person directly and hope it all works out. I've also seen you mention Genova Diagnostics Metabolic Analysis Profile (I think this is some of the tests you were referring to Sushi), and I think I've seen it doesn't need a requisition either? Please correct me if I'm wrong. If I can easily order it, I would.

I may have a line on a doc that does some detailed testing, but I don't want to get my hopes up and be disappointed yet again.

 

[richvank]

Hi, kerrilyn.

Yes, the Genova MAP test is also available from directlabs.com without a doctor's order, and this panel includes methylmalonic acid (MMA) among many other urine organic acids. Another one on this panel is figlu (formiminoglutamic acid) If both MMA and figlu are elevated, it's a pretty sure sign that the person has a partial methylation cycle block. There are also markers on this panel that can be used indirectly to infer low glutathione, i.e., a relatively high citric acid compared to the following Krebs metabolites, and a pyroglutamic acid that is either high or low. So with this panel alone, it is often possible to get a pretty good idea as to whether the GD-MCB hypothesis fits the person's case. The Vitamin Diagnostics methylation pathways panel is a more direct way to determine this, but the MAP panel can be very helpful, especially if the VD panel is not available. The costs for the two have been running essentially the same.

Rich

 

[kerrilyn]

I ordered the MAP test this morning, for 300.00 I sure hope it gets here. I couldn't order it online because I don't have a proper Zip Code. The girl on the phone did not exude confidence, at first she didn't know what the test was but luckily found it, and seemed more than a little confused that I live don't live in an actual State. LOL

 

[doveman]

I'll share what little I know about the tests.

The Serum B12 test measures both B12 attached to haptocorrin (HC) (which is mainly only received by the liver) and transcobalamin (TC) (which the rest of the body accepts). It doesn't distinguish between the two, so it can't tell you whether you have sufficient B12 attached to TC or if it's mostly attached to HC. For this reason, I consider it practically worthless. A far more useful test is the HoloTC test, which measures only B12 attached to TC and thus shows how much B12 is available to your body.

At the other end, the MMA test measures whether the process that uses the co-enzyme form of B12 called Adenosylcobalamin is working. If the MMA is elevated, that indicates that it's not. Another process uses the co-enzyme form of B12 called Methylcobalamin to convert homocysteine, so if that's not working homocysteine would be elevated. Therefore I imagine that both MMA and homocysteine need to be measured to check that both these processes are functioning properly.

As far as I know, even if these tests come back normal they can't rule out a deficiency or problem in the Spinal Fluid, which can probably only be checked by a spinal tap and even then the doctors may not know what "normal" levels should be there, so perhaps is not worth the hassle.

 

[kerrilyn]

I have most of my test results now, and hoping for some input.

Blood Tests:
Homocysteine = 7.5 (5.0 - 14.0 umol/L)
B12 = 234 (194-615 pmol/L)
Folate = 32.9 ( >12.2 nmol/L)
MMA = results pending

Ferritin = 14 (10 - 291 ug/L)
C-Reactive = 3 (up to 7 mg/L)
HbA1C = .056 (.040-060)
My GP ordered a 2 hour fasting glucose test, it was normal.

AST = 16 ( 7-31 U/L)
ALT = 17 (10-44 U/L)
ALP = 68 (45 - 129 U/L)

Liver values normal. CT revealed multiple hypodense areas in the liver most likely cysts.

My naturopathic doctor, who ordered the bloodwork, thinks my B12 is normal but I've read that values like in the 200's or 300's should be considered low. I'm aware serum B12 results are flawed for interpretation.

Hi, kerrilyn.

Yes, the Genova MAP test is also available from directlabs.com without a doctor's order, and this panel includes methylmalonic acid (MMA) among many other urine organic acids. Another one on this panel is figlu (formiminoglutamic acid) If both MMA and figlu are elevated, it's a pretty sure sign that the person has a partial methylation cycle block. There are also markers on this panel that can be used indirectly to infer low glutathione, i.e., a relatively high citric acid compared to the following Krebs metabolites, and a pyroglutamic acid that is either high or low. So with this panel alone, it is often possible to get a pretty good idea as to whether the GD-MCB hypothesis fits the person's case. The Vitamin Diagnostics methylation pathways panel is a more direct way to determine this, but the MAP panel can be very helpful, especially if the VD panel is not available. The costs for the two have been running essentially the same.

Rich

MAP results: only one is outside normal ranges. I appear to be on the low end for most of the values.

The a-Ketoglutaric Acid (AKG) is the only result that is elevated = 29 (.5-16.0)
The only other one that is near the high end is MMA = 17.7 ( <19)
Next highest (mid-range levels) are the Fumeric Acid = 0.6 (<1.4) and Figlu = 5.0 (<12.1)
Citric Acid = 280.5 (21.9-475.1)
Pyroglutamic Acid = 32.0 (21.7-105.3)
Creatnine Concentration = 0.0137 (0.0031-0.0195)

....if that means anything.

Interpretations at a Glance: Relative need from 0-10.
Thiamin and Riboflavin 4, Niacin 2, Magnesium 3

So, what does it mean to be on the low end of normal for a majority of these values, but still in normal range, is that good or bad? My MMA is high normal and Figlu mid-range so would that indicate that B12 deficiency is likely but folate is ok? Homocystine is not elevated, so Adenosylcobalamin is more an issue than Methylcobalamin? Because Figlu is not elevated does that mean I'm not someone with GD-MCB? And because the a-Ketoglutaric Acid (AKG) is elevated there is a problem with the Kreb's cycle? I'm trying to understand this and it's role with glutamate and nitrogen.

TIA

 

[kerrilyn]

I got the serum MMA test results and I'm low, I wasn't expecting that.
0.05 (0.10-0.40)

I'm not sure why the serum MMA would be low while the uMMA is high normal. I can't find any info that references a low serum MMA.
Is there is a reason why they would be so different, to do with absorption and excretion, or it is just not a relevant test?

 

[dmholmes]

I'm trying to follow as much of the B12 info on this forum as I can wrap my head around. I have had OI/POTS symptoms for many many years. Other than knowing I have low ferritin (which never seems to improved), I've not been tested for anything.

Hi kerrilyn, I can't add much to the testing discussion but I've been using B12s for about 9 months now. My OI didn't improve until I took a good absorbable magnesium, and improved very quickly after. I'd encourage you to research magnesium chloride, oral or transdermal, and chelated magnesiums like glycinate and malate. I didn't start taking it for OI but was very glad to have it almost completely disappear after a few days of good magnesium. I had previously taken other forms without any effect.

Take care,
David

 

[kerrilyn]

Thanks David, that's good to know. I don't think I get enough magnesium and the various forms confuse me. ie, which is the best/correct form to take. I need someone to give me a push in the right direction, so I will research what you've referenced here. The MAP test that I had done mentioned I could use magnesium too.

 

[aquariusgirl]

My understanding is that you want figlu and MMA to be zero. If that interpretation is correct, you are deficient in folate.

 

[dmholmes]

Thanks David, that's good to know. I don't think I get enough magnesium and the various forms confuse me. ie, which is the best/correct form to take. I need someone to give me a push in the right direction, so I will research what you've referenced here. The MAP test that I had done mentioned I could use magnesium too.

Hi Kerrilyn, the book The Magnesium Miracle has a chapter on magnesium supplementation. Which ones are best, oral vs skin application vs shots, what time of day to take etc... That would be a good place to start.

iHerb has a very affordable magnesium chloride by Nutricology. It's the most absorbable from the many forms I've tried, and has worked for friends I've recommended it to. It's a liquid, typically 1/2 teaspoon 2 or 3 times a day mixed with juice works very well.

Solgar Chelated Magnesium is good also, as should be most that use Albion labs chelated magnesium (covered here). Jigsaw Health's sustained release magnesium, dimagnesium malate from Albion, is a good one also but pricier than Solgar.

Take care,
David